US establishes registry to better understand SUDEP

Healthcare authorities in the US have established a new national registry that will be used to track the number of children and young people who die from conditions like epilepsy.

The National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) believe that eventually, the Sudden Death in the Young Registry will help researchers “define the scope” and “set future research priorities” for phenomena such as sudden unexpected death in epilepsy (SUDEP) and paediatric cardiac arrest.

Jonathan Kaltman, chief of the Heart Development and Structural Diseases Branch of the Division of Cardiovascular Sciences, NIH National Heart, Lung and Blood Institute (NHLBI), described the registry as a “critical first step” towards finding out how best to prevent unforeseen fatalities.

“The sudden death of a child is tragic and the impact on families and society is incalculable,” he commented. “This registry will collect comprehensive, population-based information on sudden unexpected death in youths up to age 24 in the US.”

At present, instances of sudden cardiac arrest or SUDEP are not routinely or systematically reported in the country, nor are there commonly agreed-upon standards or definitions for doing so. This means there is little in the way of evidence that can be used to establish known risk factors for unexpected death in the young.

According to the NHLBI, this also fuels disagreements about how fatal outcomes to conditions like epilepsy can be safeguarded against.

Not much is known about SUDEP, in terms of both the factors that put an individual at risk and the rate at which the phenomenon occurs. Autopsies tend to reveal no structural cause of death, nor an adverse reaction to antiepileptic medication.

The CDC already operates the Sudden Unexpected Infant Death Case Registry. However, this is only used to track fatalities among children up to the age of one across nine states. Consequently, the new registry represents a major expansion.

It is jointly funded by the NHLBI, the CDC and the National Institute for Neurological Disorders and Stroke, which will participate by reviewing data on SUDEP.

Epilepsy Research UK supports and promotes basic and clinical scientific research into the causes, treatments and prevention of epilepsy; and is the only national charity in the UK that funds independent research exclusively into this condition.

Epilepsy Research UK is a member of the Association of Medical Research Charities